Impact Of Disfigurement Research Articles

A systematic review of questionnaires to measure the impact of appearance on quality of life for head and neck cancer patients

Facial disfigurement is often experienced by head and neck cancer (HNC) patients following surgery and has a significant impact on their quality of life (QOL). The aim of the current review is to assess patient-reported outcome (PRO) measures for use in HNC patients, appraise the psychometric properties of QOL instruments that include an appearance domain and determine which instrument/s might be the most appropriate for use in HNC patients in clinical practice and research. A systematic search of the English-language literature was performed using the Medline and PsycINFO electronic databases. PRO measures designed to assess QOL and the impact of disfigurement on QOL were identified. Instruments were evaluated based on their development and validation criteria, appearance domain content and use in assessing QOL outcomes in HNC patients. From 530 articles, 18 QOL questionnaires were identified. Only five PRO instruments were considered suitable for review: University of Washington QOL questionnaire (UWQOLQ); Head and Neck Survey (HNS); European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Head and Neck 35 (EORTC QLQ-H&N35); Derriford Appearance Scale 59 (DAS59) and the Derriford Appearance Scale 24 (DAS24). The UW-QOL has better coverage of appearance issues than the EORTC QLQ-H&N35 and the HNS, is well validated and demonstrates promising psychometric properties. The DAS24 and DAS59 which are devoted solely to appearance issues and are not specific to HNC, have had psychometric properties tested in large scale studies, but have only been used in clinical practice in a limited number of studies. The available evidence suggests the UW-QOL is the most appropriate screening tool to assess appearance issues in clinical practice. The DAS24 shows promise as a research tool for improving understanding of how appearance affects QOL in HNC patients.

Scarring, Disfigurement, and Quality of Life in Long-Term Survivors of Childhood Cancer: A Report From the Childhood Cancer Survivor Study

Childhood cancer survivors are at increased risk for adverse outcomes and chronic medical conditions. Treatment-related scarring, disfigurement, and persistent hair loss, in addition to their long-term impact on psychological distress or health-related quality of life (HRQOL), have received little attention. Self-reported scarring/disfigurement and persistent hair loss were examined in 14,358 survivors and 4,023 siblings from the Childhood Cancer Survivor Study. Multivariable models were used to examine associations with demographic and cancer treatment. The impact of disfigurement and hair loss on HRQOL (ie, Medical Outcomes Short Form-36) and emotional distress (ie, Brief Symptom Inventory-18) was examined. Survivors reported a significantly higher rate of scarring/disfigurement compared with siblings for head/neck (25.1% v 8.4%), arms/legs (18.2% v 10.2%), and chest/abdomen (38.1% v 9.1%), as well as hair loss (14.0% v 6.3%). In age-, sex-, and race-adjusted models, cranial radiation exposure ≥ 36 Gy increased risk for head/neck disfigurement (relative risk [RR], 2.42; 95% CI, 2.22 to 2.65) and hair loss (RR, 4.24; 95% CI, 3.63 to 4.95). Adjusting for cranial radiation, age, sex, race, education, and marital status, survivor hair loss increased risk of anxiety (RR, 1.60; 95% CI, 1.23 to 2.07), whereas head/neck disfigurement increased risk of depression (RR, 1.19; 95% CI, 1.01 to 1.41). Limitations due to emotional symptoms were associated with head/neck disfigurement (RR, 1.24; 95% CI, 1.10 to 1.41), arm/leg disfigurement (RR, 1.19; 95% CI, 1.05 to 1.35), and hair loss (RR, 1.26; 95% CI, 1.09 to 1.47). Survivors of childhood cancer are at increased risk for disfigurement and persistent hair loss, which is associated with future emotional distress and reduced quality of life. Future studies are needed to better identify and manage functional outcomes in these patients.

TMJ Ankylosis: Multidisciplinary Approach of Treatment for Dentofacial Enhancement—A Case Report

This report describes the multidisciplinary phasewise treatment of a 20-year-old female patient having unilateral right TMJ bony (true) ankylosis whose mouth opening was restricted to 2 mm and mandibular retrognathism; additionally, she was also suffering from speech problems, snoring, difficulty in breathing, and low level of self-esteem and self-confidence. Bilateral gap arthroplasty and temporalis myofascial graft interpositioning through preauricular approach were done in surgical phase followed by the aggressive jaw physiotherapy in postsurgical period. Oral prophylaxis and restorations were followed by the fixed orthodontic therapy to resolve bimaxillary protrusion. Advancement sliding genioplasty was performed to enhance the chin button. Speech therapy and psychological counseling were also performed from time to time to boost up the self-esteem and self-confidence. At the end of treatment, facial esthetics was improved considerably and patient got over the impact of disfigurement, impaired functions, and psychosocial stigma. Rationale to use the multidisciplinary team approach in treatment of such cases is discussed.

Specific Unwillingness to Donate Eyes: The Impact of Disfigurement, Knowledge and Procurement on Corneal Donation

Although willingness, attitudes and beliefs surrounding solid‐organ donation have been extensively investigated, much less is known about corneal donation. Despite evidence that a substantial number of families who agree to multiorgan donation also specifically refuse corneal donation, it is unclear why this occurs and what can be done to increase rates of corneal donation. We conducted a survey of 371 Australian adults regarding their views on corneal donation. Although willingness to donate corneas generally reflected a person's willingness to donate all of one's organs, unwillingness to donate corneas appeared to be due to other factors. Specifically, decisions not to donate appear to be driven by a range of concerns surrounding disfigurement. The survey also provides eye banks with reassurance about the acceptability of whole globe procurement, and recognition that research into blindness is a highly valued part of corneal donation. Finally, the survey identifies that many individuals see benefit in having their family engaged in the decision‐making process, suggesting that decisions about donation are more complex than a simple appeal to the autonomy of the deceased.

The psychological and social impact of disfigurement to the hand in children and adolescents

Hand disfigurement creates potential problems for the developing child. Parental adjustment to the hand is of prime importance in the child's ability to accept and integrate the disfigurement. Self-consciousness follows a developmental path because of internal and external factors in the child’s development. This paper presents a research study carried out in order to examine the decision-making process in toe-to-hand transfers. 34 families were assessed of whom 27 decided to proceed with surgery following the decision-making process. Factors which influenced that decision included the way the surgeon communicated information. Those who decided against surgery tended to have more positive beliefs about the role of the disfigured hand in the child's psychological development. The process of decision-making allowed families and the older children to engage in a therapeutic approach.

Meeting the Psychosocial Impact of Facial Disfigurement: Developing a Clinical Service for Children and Families

This article reviews a child and family service addressing the psychosocial impact of facial (and other visible) disfigurement. The stigma of disfigurement poses considerable challenges in maintaining self-esteem, building self-confidence and coping effectively with the intrusive (and often negative) reactions of others. The charity, Changing Faces, addresses the psychosocial impact of facial disfigurement, promotes better health care and seeks to raise public awareness about the impact of disfigurement. Its clinical service has evolved a model of care including a social skills training component and methods of social skills training, specifically for this client group. Evaluation suggests that this model is helpful and practical, enhancing coping skills and increasing confidence.